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PORTSMOUTH, N.H. — Lydia Valdez was 8 years old and getting ready for bed one night when she casually asked her mother a question from across the room.

“Mom, do you think if I died now, would God let me see myself as a teenager?”

It was 2012, and Lydia was 15 months into what would be a 25-month battle with cancer.


“I knew a door was opening,” her mother, Paula Skelley, recalled recently from her home here. “And I remember telling myself not to let it shut. No matter how hard that was.”

Conversations about the end of life are hard for most people. But they can be especially sensitive for parents guiding children through terminal illnesses. They often struggle to discuss death because they don’t want to abandon hope; children, too, can be reluctant to broach the subject.


But pediatric specialists say the failure to discuss death — with children who are old enough to understand the concept and who wish to have the conversation — can make it harder for all involved.

A conversation could help children who are brooding silently suffer less as they approach death. It would also ensure parents know more about children’s final wishes.

“It’s not easy, but it really helps,” said Dr. Jennifer Mack, a pediatric oncologist at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center in Boston.

End-of-life conversations are perhaps more accepted than ever before. For the first time, Medicare this year is reimbursing physicians for discussions with patients about their preferences for care at the end of their lives. Living wills, which can be used to specify individuals’ medical wishes if they are incapacitated, have become commonplace.

Lydia Valdez
Paula Skelley displays a photograph of her daughter Lydia Valdez, seen here at age 8. Kayana Szymczak for STAT

But the subject of death and how to prepare for it has remained largely off-limits when it comes to terminally ill children.

Pediatric specialists say there are myriad reasons. It’s often hard to predict a child’s response to life-saving therapies and, therefore, the timing or likelihood of a child’s decline. And sometimes children with terminal illnesses, like adults, experience what clinicians refer to as “middle knowledge,” where they vacillate between accepting and denying their possible death, thereby making it hard to know when to start the conversation, said Dr. Anna C. Muriel, a psychiatrist who works with the pediatric oncology team at Dana-Farber/Boston Children’s.

Skelley said she was worried about having a conversation about death with Lydia, but she was more worried about not having it.

“I thought about the vulnerability of being that young, wanting to discuss something so badly, and thinking it’s not OK to talk about unless the adult did,” Skelley said. “It was a flash in my head, like ‘I have to do this.’”

Paula Skelley -- End of Life -- children
A “love note” that Lydia wrote to her mother six weeks before she died. Skelley said her daughter wrote her many notes in the various journals that she would draw in every day while she was sick. Kayana Szymczak for STAT

When Lydia asked whether God would let her see herself as a teenager, Skelley said, “I thought, ‘Now’s my chance. It’s casual. We’ll keep the casual tone.’”

Skelley told her daughter she believed God would grant her wish if she asked. She then asked her daughter if she thought she’d want to be cremated if she died, so her mom could keep her ashes.

“Mom, you wouldn’t want a dead person in your house!” she said, then laughed. After another moment she said, “I think I’d want to be buried at the cemetery by the school. And I want a white coffin. With bling.”

“Once that door was opened, it was easy for Lydia to bring up a question now and then. It was no longer taboo,” Skelley said. “I’d never blame anybody who hasn’t talked to their child about it, but I had no clue how many benefits there’d be.”

Parents often take cues from doctors when considering how to broach medically sensitive topics, but doctors acknowledge they, too, often avoid the subject of death, or they fail to communicate effectively.

“We get anxious walking into the room. We feel sad this is happening,” Mack said. “All these things can get in the way of listening in an open way.”

But Mack and other pediatric oncologists said children are often thinking about the possibility of death long before anyone else broaches the topic. “It’s just that the topic hasn’t been given any air,” she said.

Paula Skelley -- End of Life -- children
Skelley displays the “memory quilt” made from Lydia’s pajamas and bathrobe. Kayana Szymczak for STAT

Palliative-care specialists said that nurses who work the overnight shift are often the first to hear children discuss their own death. Lynne Showers, a nurse for 28 years at the inpatient oncology unit at Boston Children’s Hospital, said it’s no wonder why: “Sometimes to sit in a dark, quiet room and relax without the call lights ringing, without the babies screaming next door. There’s just a calmness about the night shift.”

One child, she said, knew she might die within days but told Showers that neither parent had acknowledged it. “It was like the elephant in the room. When that happens, the child will worry about their parents, like ‘What’ll happen to them when I’m gone, if they won’t even acknowledge that I’m going?’”

Showers spoke to one of the parents separately, and told the parent that the daughter was concerned about how they would hold up after she died. The parents talked with their daughter shortly after, and Showers said the family dynamic shifted noticeably.

“About three hours before she died, she pulled me in and hugged me for like a minute, saying, ‘Thank you for everything you’ve done,’” Showers said. “I’ve thought a lot about that hug.”

Skelley said her daughter found similar relief through their conversations. Her own mother had died a year earlier, making it easier for Skelley to talk with Lydia about how that grieving process worked. “My mother’s death gave her a way to gauge what grief looks like after someone you love dearly dies,” she said.

End of Life -- children
Left: Skelley displays a drawing that was used to build a memorial sculpture in honor of her daughter. Skelley named the drawing and sculpture “Smiling Through the Brokenness.” The sculpture is part of “Lydia’s Garden,” a space dedicated in her memory, located on a section of the playground of her former school, the Little Harbour School in Portsmouth. Right: Skelley stands beneath the memorial sculpture. Kayana Szymczak for STAT

In Lydia’s final days, Skelley said, they were able to speak freely about death, their relationship, their shared pain, and their confidence that they would see each other in heaven.

These conversations helped eliminate any guesswork that might have surrounded Lydia’s preferences for her care. She chose to go home when she knew the hospital had exhausted its treatment options. She told staff members she loved them, and she thanked people for what they had done to help. She died in April 2013.

“After Lydia died, I was not faced with horrendous choices to make while in the depths of despair,” Skelley said. Lydia chose her burial place, her coffin, and the teddy bear she wished to be buried with.

Making these decision empowered her when she was otherwise powerless. And as important as such things were, Skelley said their open acknowledgement of death served more critically as a way for them to ease each other’s pain.

“If we’d never had that very first conversation, she wouldn’t have let me know when the time was near. It would’ve been too big,” she said. “We would’ve been alone in our grief while sitting in the same room, rather than sharing our grief and, in a way, overcoming it together.”

“Instead we could hold each other. And that was a gift.”

Paula Skelley -- End of Life -- children
Skelley stands at her daughter’s gravesite bench. Lydia specifically requested to be buried in this cemetery to be close to her school. Kayana Szymczak for STAT
  • I was in, and I am now in that situation of NOT talking with my daughter about her terminal illness. I decided many months ago to tell her. Unexpectedly, she lost her hearing. As hard as this is to believe, it is true. I want to talk to her so bad about her upcoming death, but, she can’t hear me. How can I do this now? I can’t believe this is happening.

    • Sharon,
      This is so sad to hear. If your child is old enough to read/write, maybe journaling or typing to communicate? Children also can express themselves through art and play. Are you involved with any art therapy or child life specialists? Those specialists can help you to express the ideas that you need to express without using spoken language.
      Wishing you lots of love during this impossible time.

  • I think that when kids feel ready to talk about death is because they have a clue that this is going to hapend eventually, I have seen kids as little as 7 years old ask if they are dying and want to talk about it, what they belive, what happends after and their wishes. It´s the more difficult thing to do, maintain calm, act natural and try to guide them to open up with their parents about this. In most cases they also like to vent their feelings, sadness and fears. When they feel validated and acompaneid it helps a lot to talk with their love ones.

    • Hey Richard – I think you can start with that… “I simply have no clue what to say” sometimes just saying what we think or asking how to say something is at the very least the opening of a door even by a teeny tiny bit. 🙂

    • Hey Richard – I think you can start with that… “I simply have no clue what to say” sometimes just saying what we think or asking how to say something is at the very least the opening of a door even by a teeny tiny bit.

      Paulette, thanks. You must be a doctor or a nurse. You get it.
      I have better stuff with Mom now. I had never told her or my
      baby sister that I love them. Thanks to you I did.

  • My 46 year old son went to the ER 3 months ago thinking he had a gallbladder attack. He was diagnosed with Stage 4 hepatocellular Ca with mets to stomach, lower esophagus, lymph nodes and kidney. Basically told him there is no hope and he has maybe 4-6 months. Last week he had an ablation to control agonizing pain but after 36 hours the pain returned. I am living a nightmare and don’t know how to help him. Watching him writhe in pain is unbearable. Any other mothers out there who can give me some help in dealing with an adult child who is dying? He begs me to make the pain go away. I’m 68 and getting only 2 hours sleep a night. That I truly don’t mind but I’m battling breast Cancer so I don’t have the energy I used to have. Thank you

    • Dear Claire, I am so sorry that your son and you are going through so much trauma right now! Is there any end-of-life care put in place by the attending or specialists involved?

      When my daughter was dying, I had in-home nursing and an agency involved in which pain management and other issues could be addressed to make her last days more comfortable for her in our home. That was some years ago.

      Right now, my other daughter is going through some medical issues that have had her very close to death at times. But care is not as forthcoming as before and I have to get creative at times.

      If you cannot get what you feel your son needs right now for his palliative care, you might reach out to social services at the hospital that sees him when he gets care. You might also reach out to your own physicians to see how they may help you right now…from getting visiting nurses, to better pain management to counseling for the mental anguish accompanying what you both are going through physically.

      Reach out to Protection and Advocacy if you need to look into what your rights are…they are lawyers for persons with disability…you BOTH qualify under the circumstances.

      I am sorry for not being of more help, but please know you both are in my heart right now!


  • My Grand daughter is dying. She has a benign bone tumor in her skull. It will eventually expand into her brain. I am wanting resources that help people with dying children in order to cope – and to help others. Thank you for this.

  • This was beautiful. I have a daughter who is dying. She was born with a rare condition that ended her older sister’s life at age 18. Neither were expected to live past two. My daughter is now 37. We’ve had numerous discussions over the years which have helped us cope with years of ups and downs, uncertainty and pain. But this time we know it won’t be long. We’re living each day as if it were the last.

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